Wednesday, December 3, 2008

Biobanking has long-term consequences and a few, intangible near-term benefits

In today's genomics community few would argue that a million SNP chip analysis yields "hard evidence" of disease or a particularly high-degree of clinically and medically relevant pre-disposition information. SNPs might rather be applied as guideposts of "hints to dig deeper". So why are we broadly consenting patients and biobanking blood samples without access to tools that can more definitively diagnose disease or predisposition to disease?

On December 9 at 2:00 p.m. EST Kathy Hudson and her group at the government backed Genetics and Public Policy Center are putting on a seminar named: "Genetic Biobanks: Deposits, Withdrawals, and Consumer Protection” at the National Press Club in Washington, DC to dig deeper on these issues.

From my view, taking biological samples from broadly consented patients to perform SNP studies does enable much needed research but biobanking also leaves patients open to a quagmire of more sophisticated future analyses (CNV analysis, epigenetics, etc). More advanced interrogation of the old sample could expose things about the patient that we/they haven't anticipated. These patients, not being privvy to advances in diagnostic technologies or disease associations, may not have otherwise consented to the new tests, AND they may learn things no one could have foreseen. Consider: not only their physical health but also their mental health...their social health/fitness...

While now outdated, a 2005 paper by Caitlin Jones from the Rochester Institute of Technology on "Genetic and Environmental Influences on Criminal Behavior" shows the possible link between genetics and sociopathic behavior.

I wonder if the consented and later potentially de-indentified patients would want anyone to know they have a pre-disposition to Attention Deficit Hyperactivity Disorder (ADHD), Conduct Disorder (CD) or Oppositional Defiance Disorder (ODD)?

How do we prospectively write consents to anticipate technological changes? How do we inform patients of these kinds of unanticipated results? It is a physician's duty, no? Or will we distribute the results ONLINE...DTC?

1 comment:

  1. Matt,
    Did you see that the EU Government may make biobanking illegal.